Health IT expert John Wilbanks explores whether the desire to protect privacy is slowing research, and if opening up medical data could create a wave of health care innovation.

About John Wilbanks

John Wilbanks wants to create an open, massive, mine-able database of health and genomics data from many sources. As the chief commons officer at WeConsent.us, he focuses on the ethics and procedures necessary to turn genetic info into big data — giving researchers the potential to spot patterns that they simply cannot see up-close.

In February 2013, the U.S. government responded to a We the People petition — spearheaded by Wilbanks — by announcing a plan to open up taxpayer-funded research data and make it available for free.

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Transcript

GUY RAZ, HOST:

It's the TED Radio Hour from NPR. I'm Guy Raz. And on the show today, the end of privacy. So John Wilbanks believes that we will all be a lot healthier and that we could potentially conquer big diseases like cancer if we just stop obsessing so much about medical privacy. And start to understand that the things that were designed to protect our privacy are actually making medical breakthroughs a lot harder to achieve. And it starts with a concept called informed consent. Here's John's explanation from the TED stage.

(SOUNDBITE OF TED TALK)

JOHN WILBANKS: Informed consent is an idea that we should be very proud of as a society, right. It's something that separates us from the Nazis in Nuremberg and forced medical experimentation. It's the idea that agreement to join a study without understanding isn't agreement. It's something that protects us from harm, from hucksters, from people that would try to hoodwink us into a clinical study that we don't understand or that we don't agree to. And so you put together the thread of narrative, hypothesis, experimentation in human and informed consent and you get what we call clinical study. And it's how we do the vast majority of medical work. It doesn't really matter if your in the north, the south, the east, the west. Clinical studies form the basis of how we investigate. So if we're going to look at a new drug, right, we test it in people.

We draw blood, we do experiments and we gain consent for that study to make sure that we're not screwing people over as part of it. And the way we gain informed consent - this tool that was created to protect us from harm - now creates silos. So the data we collect for prostate cancer or for Alzheimer's trials goes into silos where it can only be used for prostate cancer or for Alzheimer's research, right. It can't be networked. It can't be integrated. It cannot be used by people who aren't credentialed. So a physicist can't get access to it without filing paperwork. A computer scientist can't get access to it without filing paperwork. And this is an accident. These are tools that we created to protect us from harm, but what they're doing is protecting us from innovation now.

What really depresses me is that all these studies on prostate cancer and all these studies on skin cancer can't be combined. The answer to prostate cancer may be in skin cancer and vice versa. We don't know. I mean, the chief argument for sharing this information, to me, is the ability to make unanticipated discoveries.

RAZ: And this is all because of our misreading of privacy?

WILBANKS: Privacy is a piece of it. It's an attempt to protect us from harms that are far less potent than the benefits that we could receive.

(SOUNDBITE OF TED TALK)

WILBANKS: And that wasn't the goal. It wasn't the point, right. It's a side effect, if you will, of a power we created to take us for good. We cannot take the information from past trials and put them together to form statistically significant samples. And that sucks, right. So 45 percent of men develop cancer. Thirty-eight percent of women develop cancer. One in four men dies of cancer. One in five women dies of cancer, at least in the United States. And three out of the four drugs we give you, if you get cancer, fail. And this is personal to me. My sister is a cancer survivor. My mother-in-law is a cancer survivor. Cancer sucks.

And when you have it, you don't have a lot of privacy in the hospital. You're naked the vast majority of the time. People you don't know come in and look at you and poke you and prod you. And when I tell cancer survivors that this tool we created to protect them is actually preventing their data from being used, especially when only three to four percent of people who have cancer ever even sign up for a clinical study, their reaction is not thank you, God, for protecting my privacy - it's outrage that we have this information and we can't use it, and it's an accident. So the cost in blood and treasure of this is enormous - 226 billion a year is spent on cancer in the United States, 1,500 people a day die in the United States, and it's getting worse.

RAZ: So how would that change, you know, if, like, more of that information was available to researchers, like, if more of that data from cancer patients wasn't kept behind walls?

WILBANKS: What I hope would happen is that we would be able to find some of the patterns that are driving cancer. And we're studying it in such small sample sizes right now. You know, when we have to go out and enroll people with skin cancer, it costs, anywhere from $500 to $5,000 per patient just to enroll them in the study. And at the same time, we've got, you know, tens of thousands of people a day with melanoma and others kinds of skin cancer about whom very valuable data is being generated that could form a natural study.

And we're basically throwing that data away. And so what I'm hoping we could do is is basically explode the number of people who participate in clinical studies by not having them be forced to enroll in some sort of complex study that they see on the subway, but be able to join a clinical study by routing a copy of their data to someone doing the research.

RAZ: But, I mean, if more of this medical data was available and, like, easy to combine and cross reference, I mean, do you think we would have made, like, more progress on finding out better treatments for cancer and other diseases?

WILBANKS: I do. I do. At a minimum, we'd be able to figure out who shouldn't be taking cancer drugs. Cancer drugs have an astonishingly high failure rate, right. Anywhere between 50 percent and 80 percent of the time when we give a cancer drug to a person, all they get is the toxicity. If we knew, right, what the genetic variation were of those people and we could run complex math on it like we run on NSA data, like we run on Google data, like we run on Amazon data, we could probably come up with a list of a thousand rare variations that strongly correlate with the drug failing.

RAZ: So you want people to give this information over voluntarily like they give information over to Facebook or any other social media platform.

WILBANKS: I do. But I want them to have more agency involved in the decision. And what I want is for people with their eyes open, right, understanding the choice they're making to begin contemplating whether or not to make the choice to share.

(SOUNDBITE OF TED TALK)

WILBANKS: So the thing that I'm proposing we do here is that we reach into our bodies and we grab the genotype. And to reach into the medical system and we grab our records, and we use it to build something together, which is a commons. We do it voluntarily. We do it through standardized legal tools. We do it through standardized technologies, right. That's all a commons is. It's something that we build together because we think it's important.

So that's what I do. I've actually started what we think is the world's first fully digital, fully self-contributed, unlimited in scope, global in participation, ethically approved clinical research study where you contribute the data. And you can actually upload your information and have it syndicated to the mathematicians who will do this sort of big data research. And the goal is to get a hundred thousand in the first year and a million...

RAZ: OK, this sounds incredible, right. But, I mean, you could see how all that information could be abused, right, 'cause, like, information is control.

WILBANKS: Right. There are all sorts of great science fiction scenarios for the bad things that could happen if your genetic information becomes available. And I don't particularly think that those are very likely. I worry more about bullying. I worry more about trolling 'cause these are things that we know people do anyway. And that's why it's so important not to take the informed consent issue and throw it out with the bathwater, but to find a way to harmonize it so that the people who are in this vast database, about whom we're collecting lots of information, understand and agree to the risks that they're running. And so one of the great ironies, to me, of the Snowden era is that it has illustrated the value of meta-data to people that aren't nerds. The exact same thing that makes you identifiable makes your data scientifically valuable.

RAZ: John Wilbanks. He's on a crusade to change medical research. Find out how you can submit your medical data at TED.NPR.org. Transcript provided by NPR, Copyright NPR.